Where to go in getting help with non-epileptic seizures.
December 17, 2007 1:37 PM Subscribe
Looking for resources on non-epileptic seizures.
A relative of mine, a teenage girl, has been having daily non-epileptic seizures for the past two and a half years. These are thought by health professionals to be caused by anxiety. They last several hours a day and she is groggy for a long time when coming round from them, so they effectively stop her having any sort of life. Health and social services have been involved but there seems no clear plan and the seizures are getting worse (lasting longer and her behaviour whilst coming round from them is more extreme). Her parents are intelligent people but don't like asking for help and struggle to be clear what professionals intend to do. Social services say that access to resources is limited because the child has no diagnosis, though her parents think she has (non-epileptic seizures).
Where can her parents, and the child herself, go for additional support in understanding and coping with this? Are there any appropriate groups (the family live in the UK) they could access? Are there any academic or lay publications or research that they could read (anything from esoteric analysis to "it happened to me" would give them something to go on)? Any internet groups? Any hospitals or universities with particular expertise in this? The family are finding this very hard to deal with and would appreciate any suggestions. They have done some Googling and found some information about the basics of the condition and evidence that cognitive therapy probably works best in resolving it, but could really do with more resources to enable them to get the best from health services.
A relative of mine, a teenage girl, has been having daily non-epileptic seizures for the past two and a half years. These are thought by health professionals to be caused by anxiety. They last several hours a day and she is groggy for a long time when coming round from them, so they effectively stop her having any sort of life. Health and social services have been involved but there seems no clear plan and the seizures are getting worse (lasting longer and her behaviour whilst coming round from them is more extreme). Her parents are intelligent people but don't like asking for help and struggle to be clear what professionals intend to do. Social services say that access to resources is limited because the child has no diagnosis, though her parents think she has (non-epileptic seizures).
Where can her parents, and the child herself, go for additional support in understanding and coping with this? Are there any appropriate groups (the family live in the UK) they could access? Are there any academic or lay publications or research that they could read (anything from esoteric analysis to "it happened to me" would give them something to go on)? Any internet groups? Any hospitals or universities with particular expertise in this? The family are finding this very hard to deal with and would appreciate any suggestions. They have done some Googling and found some information about the basics of the condition and evidence that cognitive therapy probably works best in resolving it, but could really do with more resources to enable them to get the best from health services.
Just occurred to me -- maybe she's catatonic? That sort of matches the symptoms you describe.
posted by the dief at 2:28 PM on December 17, 2007
posted by the dief at 2:28 PM on December 17, 2007
The 1 mg/day Ativan course lasts three days -- sorry about omitting that little detail.
posted by the dief at 2:30 PM on December 17, 2007
posted by the dief at 2:30 PM on December 17, 2007
You might want to research Conversion Disorder, if it sounds like the doctors are saying the seizures are caused by anxiety.
(It's worth noting that a large percentage of people diagnosed with Conversion Disorder do, however, end up with a more specific medical diagnosis that explains their symptoms.)
posted by occhiblu at 2:44 PM on December 17, 2007
(It's worth noting that a large percentage of people diagnosed with Conversion Disorder do, however, end up with a more specific medical diagnosis that explains their symptoms.)
posted by occhiblu at 2:44 PM on December 17, 2007
More information on conversion disorder, which I link because it's got a fair amount of jargon (as well as information) that might help in further research/searching.
posted by occhiblu at 2:57 PM on December 17, 2007
posted by occhiblu at 2:57 PM on December 17, 2007
Pseudoseizures and psychogenic seizures are other vocab/key words that might prove helpful for research.
posted by occhiblu at 4:35 PM on December 17, 2007
posted by occhiblu at 4:35 PM on December 17, 2007
I'm sure she has had a ct scan or an mri yeah? Normally it is one of the first things that doctors do in situations like this but you never know.
I have known three people in my life that had non-epileptic seizures and all three were caused by a brain tumor.
posted by Holy foxy moxie batman! at 5:25 PM on December 17, 2007
I have known three people in my life that had non-epileptic seizures and all three were caused by a brain tumor.
posted by Holy foxy moxie batman! at 5:25 PM on December 17, 2007
They didn't have non-epileptic seizures hfmb if they had brain tumors. Whether you call them pseudoseizures or psychogenic non-epileptic seizures, once an initial evaluation by a neurologist experienced with seizure disorder has carefully ruled out epileptic seizures, I'd try to find a psychiatrist and psychologist who specialize in conversion disorder, though this may be quite difficult and I can't say I know how one would access such people in the UK. Short of that, I'd look carefully for triggers to these episodes and try to find someone specializing in cognitive behavioral therapy.
The first few google hits on occhiblu's links provide additional context.
posted by drpynchon at 5:59 PM on December 17, 2007
The first few google hits on occhiblu's links provide additional context.
posted by drpynchon at 5:59 PM on December 17, 2007
I've never heard of non-epileptic seizures though.
Cataplexy is a kind of non-epileptic seizure that I'm intimately familiar with. It would be beneficial to rule out narcolepsy before going down more expensive roads of CAT scans, MRIs and the like.
If it turns out she's suffering from cataplectic episodes brought about by narcolepsy, there are treatments that are available, but they only treat the symptoms, not the cause (i.e. no cure).
posted by Civil_Disobedient at 6:22 PM on December 17, 2007
Cataplexy is a kind of non-epileptic seizure that I'm intimately familiar with. It would be beneficial to rule out narcolepsy before going down more expensive roads of CAT scans, MRIs and the like.
If it turns out she's suffering from cataplectic episodes brought about by narcolepsy, there are treatments that are available, but they only treat the symptoms, not the cause (i.e. no cure).
posted by Civil_Disobedient at 6:22 PM on December 17, 2007
This is a hard question, and the fact that you're in the UK makes it harder to answer.
The first thing, in my opinion, is that you must officially confirm the diagnosis. The story you give sounds plausible, but in my experience even a seizure expert - someone, like me, who's been trained for years to know everything there is to know about seizures - can't always distinguish an epileptic from a nonepileptic seizure just by looking at the seizure or by hearing the story. Additionally, there are several reasons to have non-epileptic seizures, though by far the most common reason is a psychological origin. If the diagnosis is not confirmed, I have found that every specialist the patient subsequently encounters tends to return to the hypothesis of a misdiagnosed epilepsy, wasting time and effort and complicating the care of the patient tremendously.
When non-epileptic seizures are psychogenic, they often are not a trivial manifestation of a throwaway word like "anxiety;" to the contrary, the disorder is usually severely disabling.
The usual procedure in the USA is to refer such a patient to an academic comprehensive epilepsy center to undergo inpatient video-EEG telemetry monitoring. To my knowledge, there are not many video inpatient EEG units in Europe and the test is not widely utilized there. This test, interpreted by a competent expert, is useful because it renders a solid diagnosis of a person's seizures. Unfortunately, epilepsy centers are concerned with epilepsy; many academic neurologists view patients with non-epileptic seizures as unfortunate by-products of operating an epilepsy center, to be disposed of as speedily as possible. A few epilepsy centers maintain an NES specialist on-site; these are usually psychiatrists or neuropsychologists.
Once the diagnosis of NES is in hand, supportive psychotherapy is the mainstay of treatment. As occhiblu suggests, nonepileptic seizures are often a manifestation of conversion disorder and the treatments found to be effective are similar. Antiepileptic medications are useless.
Tim Betts, the neuro-psychiatrist at the Queen Elizabeth Hospital in Birmingham, is a world expert in non-epileptic seizures and I would certainly try to seek his opinion if I were in your shoes. Ley Sander and Simon Shorvon at University College, London, are certainly the U.K.'s best in terms of medical epilepsy specialists and you may consider a visit to one of their clinics as well.
I hope this has been helpful. Good luck to you.
posted by ikkyu2 at 10:52 PM on December 17, 2007 [1 favorite]
The first thing, in my opinion, is that you must officially confirm the diagnosis. The story you give sounds plausible, but in my experience even a seizure expert - someone, like me, who's been trained for years to know everything there is to know about seizures - can't always distinguish an epileptic from a nonepileptic seizure just by looking at the seizure or by hearing the story. Additionally, there are several reasons to have non-epileptic seizures, though by far the most common reason is a psychological origin. If the diagnosis is not confirmed, I have found that every specialist the patient subsequently encounters tends to return to the hypothesis of a misdiagnosed epilepsy, wasting time and effort and complicating the care of the patient tremendously.
When non-epileptic seizures are psychogenic, they often are not a trivial manifestation of a throwaway word like "anxiety;" to the contrary, the disorder is usually severely disabling.
The usual procedure in the USA is to refer such a patient to an academic comprehensive epilepsy center to undergo inpatient video-EEG telemetry monitoring. To my knowledge, there are not many video inpatient EEG units in Europe and the test is not widely utilized there. This test, interpreted by a competent expert, is useful because it renders a solid diagnosis of a person's seizures. Unfortunately, epilepsy centers are concerned with epilepsy; many academic neurologists view patients with non-epileptic seizures as unfortunate by-products of operating an epilepsy center, to be disposed of as speedily as possible. A few epilepsy centers maintain an NES specialist on-site; these are usually psychiatrists or neuropsychologists.
Once the diagnosis of NES is in hand, supportive psychotherapy is the mainstay of treatment. As occhiblu suggests, nonepileptic seizures are often a manifestation of conversion disorder and the treatments found to be effective are similar. Antiepileptic medications are useless.
Tim Betts, the neuro-psychiatrist at the Queen Elizabeth Hospital in Birmingham, is a world expert in non-epileptic seizures and I would certainly try to seek his opinion if I were in your shoes. Ley Sander and Simon Shorvon at University College, London, are certainly the U.K.'s best in terms of medical epilepsy specialists and you may consider a visit to one of their clinics as well.
I hope this has been helpful. Good luck to you.
posted by ikkyu2 at 10:52 PM on December 17, 2007 [1 favorite]
This article is an OK, but not great, overview of non-epileptic seizures. Most people have never heard of them, although I see that didn't stop a few from giving you advice about them anyway.
posted by ikkyu2 at 11:00 PM on December 17, 2007 [1 favorite]
posted by ikkyu2 at 11:00 PM on December 17, 2007 [1 favorite]
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That said, whenever my wife has her seizures we put her on a course of Ativan, around 1mg/day. This usually (in all prior cases but maybe one, at any rate) stops her from having more seizures. Ativan is a fairly heavy duty sedative (think like Valium) so it might have application for your relative with regards to the anxiety. It can, like Valium, be very addictive.
If anybody more of a neurological bent than I can speak as to what in heck non-epileptic seizures are, that might help you more.
posted by the dief at 2:26 PM on December 17, 2007